How to Manage Lifting and Mobility?
AnonymousApril 25, 2011 at 5:31 pm
My wife has had CIDP & Poly for over 15 years, diagnosed & treated for 7. She continues to decline and has about 10% strength remaining in hands/arms/legs/feet. I have been her caretaker and my lifting requirements have become greater while my lifting ability has declined. Thus I’m seeking information and recommendations for you experts.
Once on her feet and steadied, she can walk in the house with a cane, outside on flat areas with a walker, not on uneven ground without my supporting her. We have a transporter for anything over 30 yards or so and uneven ground.
Since her hands and arms are so weak (it’s all she can do to open the refrigerator with both hands) hand bars while good for steadying her are no use to pull up.
We’re both in late 60’s and on Medicare with good private insurance as secondary.
I’m afraid I won’t be able to lift her as she looses more ability, so what options do we have for in-house and going places?
AnonymousApril 25, 2011 at 11:33 pm
Hi there. I was in the same condition as your wife. I just got to where I was walking okay with a cane and I was swallowed up by a sidewalk and broke my right foot. Anyway, you need to call your insurance companies to see if they cover any home health care or someone to come in to help house work. Your wife’s doctor might have some answers to your questions also.
AnonymousApril 26, 2011 at 12:02 am
Yeah, see broke 3 bones in multiple places in 1 ankle; torn ligaments in the other; and ligament and cracked kneecap; all in separate falls. It’s difficult for her to finally accept that this isn’t getting better and it breaks my heart to see her have to do it, but life is what it is.
We have the toilet seat topper, carry cushions which all help but still she needs a lift. We see her neuro Thursday and will talk about it, but I was hoping to find out what works from others going through it.
AnonymousApril 26, 2011 at 9:07 am
Recommend you call your nearest MDA location. You can find the locations on-line. [url]http://www.mda.org/locate/[/url]
also, suggest you ask the same question over on the ALS forum. Statistically, it is far more likely that you will find people in a similar situation as you are in.
For example, they have a section for Tips, Tricks and Gadgets-
If, for some reason the link no longer works go to [url]http://www.alsforums.com/[/url]
In addition, I like to peruse these two catalog websites-
Patterson Medical, makers of Sammons Preston products-
and North coast Medical- [url]http://www.ncmedical.com/index.html[/url]
Click on the area of interest or enter a search parameter. I usually look at ADL (Activities of Daily Living) or Mobility Aids.
Specific things we’ve done is to change all the door knobs in our house to levers.
good luck, I hope all the best for you.
AnonymousApril 26, 2011 at 3:01 pm
I’m very sorry to hear about your wife. I cannot even imagine how hard it must be to watch her decline & to be her caretaker.
Would you mind sharing what treatment your wife has gotten over the last 7 years.
Has she received any PT or OT? You may be able to find a home care agency that can come out to your home to work with her.
AnonymousApril 26, 2011 at 8:10 pm
I was in that condition for 2 1/2 years before I got cytoxan infusions. Actually I was worse, as I couldn’t walk at all, arms were weak, hands were all but useless. I used a power chair to get around the house & elsewhere, we had a plain minivan with a powerlift in the back. I used a sliding board to help me transfer to the recliner, the commode & the power chair. I also used the sliding board to transfer to my shower chair in the bathroom, before that hubbie had given me sponge baths for 2 years. We did do stand up transfers when he was home, to get be upright to stand & get into the van. Fortunately I have longs legs & onlyweighed 136# at that time. Watch your back, as it doesn’t take much to ruin it as we age.
AnonymousApril 29, 2011 at 9:17 pm
She has been getting IVIG treatments 20gm 2x week for 7 years, but missed a few this year with other medical and family issues. We saw the doc at USC yesterday and he said to get back on schedule at 2/Week and if she doesn’t regain some strength to ask her local hematologist about trying Rituximeb.
In the past she was in PT Rehab for about 3 months to gain enough strength to use her new KAFO brace (Ottobock Freewalk). It may have improved a little but not to where I could see it. The brace was an auto-locking KAFO to lock the knee when bearing weight and release it for almost normal stride. The idea being to prevent leg collapse and fall. She takes short steps and couldn’t modify her stride (ankle pivot) to release the lock and it was too frustrating for her to continue.
I forgot to mention that she had Interferon with Beta something for 6 weeks which came very close to killing her. On her weekly lab report her white cell dropped and the doc called to nave me get get to ER. They watched the White blood count drop into the really bad levels gave her an infusion of platelets and several bags of Saline. Took all day and her hematologist still reminds her at each visit how close she came.
I can’t seem to get a full answer from the doc about what happens if she continues down this path. Can anybody tell me? I can’t help but imagine all kinds of horrible things. Surely somebody here knows how CIDP and Poly progresses.
I did go the the ALS site but had to get away from it for now. Too much bad stuff for today. I’ll try again later.
AnonymousApril 29, 2011 at 10:01 pm
OldLincoln ~ So sorry to hear about what you and your wife are going through. Over the years I’m sure you’ve both learned that its not always strength alone that gets the job done but rather a combination of brains and brawn ~ in that order. I was thinking about your post as I was loading my 250 lb wheelchair into my van and marveled that the hoist (Bruno) was powered by my van’s 12 volt battery. It has a swing radius of 45+ degrees and it occurred to me that it doesn’t have to be a wheelchair on the end of the critter, not does it have to be in a vehicle either. So, I thought why not next to a bed or anywhere its needed and adapted to lift someone with the added feature of the swing radius. Because of its absolute importance to me I have a spare in case the old one goes kaput. I bought both of mine used – one off of ebay for less than $250 and the other from a ‘chance meeting’ in the wheelchair corral at a concert. Long ago, I used a gear box removed from an old Caterpillar tractor to lift large logs – the gear box was normally powered by a PTO (the engine) but I noticed that it could be also be easily operated with a hand crank. Because I experience physical weakness on a daily basis (CIDP, and to me a book is heavy – and dictionaries, forget it, and can’t make it to the mail box on two crutches anymore). But I haven’t run out of ideas or what’s possible. As a care-giver you have totally different perspective and asking ‘what do you do?’ shows me me the ‘brain’ part of the formula is intact. I’m sure what I wrote is not your solution but wanted to share the thoughts. Best to you both…
AnonymousApril 29, 2011 at 10:11 pm
Big Tree, thanks! I’ve been thinking along those lines and mounting one next to the toilet so she can put her arms through it with a band around under her armpits. She’s not real heavy but is dead weight until she locks her legs and gets steady. I will think more on that and check out small powered winches, etc. The TV room problem can probably be helped with a power lift chair.
We still have problems away from home. I had to have management close down the women’s restroom in a shopping center on our way to USC so I could take her in there. I never gave the handicapped stuff a thought until I saw her need them.
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